Tales and fleeting memories of my liver journey unabashed

Month: August 2016

(disclaimer – this might be hard for some of you to read that were close to mom)

I miss you

Why aren’t you here

Why did you leave – what was so unbearable that choosing to leave us was the best option

Why weren’t you ever honest with us

I thought I was the only one you opened up to but turns out no one was…now we’re left with just your only close family piecing bits together to make sense of this all

I’ll never forget Debby, Angie, Walt, Tommy walking into the house

I’ll never forget walking in and sitting on dad’s lap like I did when I was a little girl – I’ll never forget watching you being rolled out of the house on the stretcher and that dark, black bag.

I’ll never forget Dad looking for his slippers in his room the first night and being mad he didn’t think to pack them

I’ll never forget Dad and I staring at the breakfast menu for what seemed like an hour because we couldn’t fathom something as simple as breakfast after what had happened

I’ll never forget begging Howard to get on a flight here

I’ll never forget Dad determined to “get in there” (to their bedroom) and “start cleaning up after Jerry is done” (jerry town cleaned the room himself the next day….i can’t ‘imagine what that must have been like)

I’ll never forget no one wanting to go into the room initially with dad

I’ll never forget my family there going in and being with me helping dad clean off the blood that was missed

I’ll never forget the furtive apologetic looks I would glance at the ceiling above where she died and then back at my relative that entered the room wanting to say over and over I’m sorry naturally…

I’ll never forget Jenn and I grabbing things to clean blood off before dad saw them

I’ll never forget the shock – the haunting scream – how time stopped utterly – how I instantly thought of where I was when she did it because I knew exactly what she had done because of the day and how long I had spent with her before on her prior attempts – she made sure there was no way out

I’ll never forget running up the stairs screaming to Sean who was asleep about what happened – I’ll never forget Sean screaming and then throwing up…

I’ll never forget the kindness of Jamie and Paige coming to get me to take me to Dad’s because he was worried about me driving in such a state from Galveston to Houston…

I’ll never forget the way she said “helllooooooo” after you said “hello hello hello” on the answering machine at the house – yes they still kept one and then she’d pick up so telemarketers didn’t pester her

I’ll never forget how happy she was all the time at Christmas and the 4th of July – her favorite music seasons – I’ll never forget how music moved mom and made her genuinely smile and lose herself

I’ll never forget how fiercely mom protected my brother and I from the world….something I used to fault her on, but now I am grateful for it

I’ll never forget how she stomped her feet when she was joking …. Usually becs my father cracked a joke about her height – me, Howard and him were the only ones allowed to joke about it in her mind – otherwise, no matter what she said, her feeling were hurt and she talked about it at home…usually to me…sorry

I’ll never forget how it feels to still have you here – something I’m terrified of losing, the sound of your voice, the smell of your perfume

I’ll never forget cursing at you that you left, the main, main year I needed you and your crazy insane focused love when I got sick

I’ll never forget every time I go into the hospital and don’t know if I’m leaving and I picture you there and wonder how you would chose to sleep in my room because I know you would not leave – yet you chose to leave – so how much worse must have what you were going through have been compared to the little pain physical pain I’ve experienced…

I’ll never forget how at least, at least, multiple times a week I forget you aren’t here….even now

I have no idea how I am going to face my life going forward without you

I’ll never forget how I stared with a purpose while your coffin was lowered….i refused to let myself look away…like you were still there, yet you were there, I know that now – you never leave me.

“you – you alone will have the stars as no one else has them…In one of the stars I shall be living. In one of them I shall be laughing. And so it will be as if all the stars were laughing, when you can look at the sky at night..You – only you – will have stars that can laugh.” – El Principito

I miss you mom…

“The bad psychological material is not a sin but a disease. It does not need to be repented of, but to be cured. And by the way, that is very important. Human beings judge one another by their external actions. God judges them by their moral choices. When a neurotic who has a pathological horror of cats forces himself to pick up a cat for some good reason, it is quite possible that in God’s eyes he has shown more courage than a healthy man may have shown in winning the V.C. When a man who has been perverted from his youth and taught that cruelty is the right thing does dome tiny little kindness, or refrains from some cruelty he might have committed, and thereby, perhaps, risks being sneered at by his companions, he may, in God’s eyes, be doing more than you and I would do if we gave up life itself for a friend.

It is as well to put this the other way round. Some of us who seem quite nice people may, in fact, have made so little use of a good heredity and good upbringing that we are really worse than those whom we regard as fiends. Can we be quite certain how we should have behaved if we had been saddled with the psychological outfit, and then with the bad upbringing, and then with the power, say, of Himmler? That is why Christians are told not to judge. We see only the results which a man’s choices make out of his raw material. But God does not judge him on the raw material at all, but on what he has done with it. Most of the man’s psychological makeup is probably due to his body: when his body dies all that will fall off him, and the real central man, the thing that chose, that made the best or worst out of this material, will stand naked. All sorts of nice things which we thought our own, but which were really due to a good digestion, will fall off some of us: all sorts of nasty things which were due to complexes or bad health will fall off others. We shall then, for the first time, see every one as he really was. There will be surprises.”

So these are the top 10 recent questions that have been messaged to me….and subsequent answers. My very own brief AMA (ask me anything re: Reddit)

How did you sleep with all the tubes in you?

Very very uncomfortably, with about 6 pillows around me and with my head cocked to the left. When I got most of my tubes out I had to relearn/retrain my muscles to hold my head upright because it just kind of leaned to the left constantly.

Was it hard learning to walk again?

Pretty hard. My legs remembered how to move moreless, but I had no muscles to go with the movement. I went from using a walker with help during PT in the hospital, to a half walker/half wheel chair at home until around March. I still haven’t figured out how to run yet though lol. But to me that’s a good thing J

What was it like when you could talk again or how does that work with a trach?

So they give you a speech valve you can put over your trach. It lets you talk quietly but it’s really hard to breathe with one on so I tended to not use it until they had decreased the size of my trach. By then they showed me that I can just stick my finger over the hole and talk just the same as with the speech valve.

What did you do on medical leave?

Slept a lot and binge watched tv shows! But about a month before I was to start work again I started getting pretty stir-crazy and bored.

Do you get to know who your donor was?

Yes, on the one year anniversary of my transplant.

Do IVs hurt?

They do at first, but you get used to them. Now I don’t even flinch or stop talking to someone when they put them in.

Did you have a stuffed animal with you?

Yes, I was brought a stuffed Kermit the frog randomly and I slept with that. When the nurses would change my sheets they got to where they tucked Kermit back into my bad for me.

Did they celebrate holidays while you were there?

Yes actually. The day I got into ICU at Methodist it was Halloween so all the nurses were in costumes. On thanksgiving they had a special thanksgiving meal for everyone. On Christmas they also had a special meal and volunteers came around and gave everyone on the ward stockings with gifts in them.

What did you watch on tv?

Oddly enough, the weather channel or the ambient noise channel where they have waves crashing and forest sounds rotating.

You find humor in what happened to you, what was one of the funniest times you had that you haven’t written about yet?

When I was finally able to take a shower I was able to stand on my own for a bit if I was holding on to things. So I showered and when I was done I was reaching for my hair rubber band on the sink and because I was so shaky I dropped it on the floor. I bent down to grab it out of a basic reaction and then realized I could not get up because I had no muscles. So I was stuck on the floor and I couldn’t get up for a bit. I eventually figured out a way to pull myself up with my arms and made my way back to the safety of my bed lol.

I was thinking about friends, relatives and connectedness to others today. Charles Bukowski wrote, “If you want to know who your friends are, get yourself a jail sentence.” It made me think of who I wanted to see while in the hospital when I didn’t think I would make it and vice versa…who wanted to see me and say goodbye. I mean honestly think about it…I’m not talking about the people you feel like you are obligated to say you wanted to see to say goodbye to in person, but the people you really truly wanted to just see their face just one more time. And, I don’t mean this in a romantic way necessarily, I mean it could be, but I was just thinking broadly.

In my case, the people that visited me once or twice really surprised me – I loved seeing them and I loved the surprise that those people thought to come visit. Some of them made our connection stronger by visiting and saying what they did. And some made our connection incredibly stronger and I will cherish that forever. I’m not going to name or shame anyone in this post by the way – no one should do that, but it shouldn’t stop you from expressing your thoughts and feelings. I’m not trying to make anyone feel bad. But it did surprise me who came. It also surprised me who didn’t visit. And again, keep in mind I’m not trying to make anyone feel bad. I think it is only natural for someone to think of these things after being in my situation. So, thinking about this made me make a list of those that I would be ok with saying goodbye from a distance (via facebook, email or just that they heard I had passed from friends of friends etc.) and who I would be desperately clinging to the side of their bedrails trying to memorize everything about them and our memories before they were taken away and we were separated by death. I know some people deal with grief and saying goodbye in very different ways. One of my best friends, whom I love and highly respect, refuses to go to funerals or to say goodbye to their relatives even because they wanted to remember them how they were when they were well and in good spirits. I went to his grandmother’s funeral who raised him partly and even then he would not attend the service and generally did not want to be there to ruin his memories of her. And that makes sense to me too. Saying the last goodbye is a complicated and hard thing to do and is different for everyone, there should be no judgement from anyone about how one grieves.

In another instance of this, it has also surprised me what people have said to me in private regarding how they felt when they found out the seriousness of my condition and my subsequent recovery from imminent death for now. Since writing my blog several people have shared with me what they wanted to have said to me to say goodbye as they couldn’t bring themselves to be there in person for one reason or another. It’s been a wonderful experience so far, some very strange and unique, but wonderful nonetheless…but then again most people have only said nice things to me thankfully.

So I wanted to put it out there for ya’ll. Who would you want to see if you were on your deathbed and who could you honestly do without seeing in person before you left this world? And after thinking about that, who would you look forward to the most in seeing in heaven/afterlife? Also, who are you scared to see or not want to see there as well?

I made the same list…and just a suggestion, make sure the people you want by your bedside at the end know that now and do what you can to not add to the list of those you are scared to see after you’ve said your goodbye lol. Assholes need kindness too.

Sorry for a day late on “Saturday Recipe Day”….like i’ve said before following a restricted kidney and liver diet is pretty strenuous and don’t think I don’t have cheat days. It’s pretty difficult sometimes to not revert back to “comfort foods”. But like most things, I’m learning to embrace the new normal in my life…I still haven’t come around to kale…it’s entire existence angers me most times lol, but here’s a my attempt to be a little more “hip” with food choices whilest keeping my liver and kidney’s happy. Also my inner vegetarian has been making my taste buds a little biased this week…so this combination looked amazing for me to try today 🙂

Peach and Portobella Burgers with Roasted Beets with Pistachios, Herbs and Orange paired with a Shaved Jicama and Watermelon Salad

Preparation: Clean the portobello mushrooms by carefully removing dirt from the caps with a kitchen towel or cloth; you can use a little water if needed. Pat dry. Cut the peaches in halves and remove the pits.

Making the marinade: Pour olive oil in a small bowl. Add one chopped rosemary sprig, chopped thyme, mashed garlic, freshly squeezed lemon juice and salt and pepper to taste. Stir around. Use the other rosemary sprig to brush the mushrooms and peaches with the marinade. When the grill is ready, grill the portobello and peaches for about 3 to 4 minutes on each side, while you use the rosemary stick to brush the marinade over them one more time.

Making the guacamole: Chop avocados, tomatoes and parsley roughly. Add them to a small bowl with mashed garlic. Squeeze lemon juice over it, and mash everything with a fork. It’s okay if it stays a little chunky.

Assembling the burger: Slice the buns in halves. Let them get some color on the grill. When done, place a big dollop of guacamole on the bottom bun, and add pea sprouts, tomatoes, spring onion, one portobello mushroom and two peach halves. Add the top of the bun, and insert a stick to hold it all together.

Preheat the oven to 375°. Arrange the beets in a roasting pan and add the cinnamon, bay leaves and water. Cover tightly with foil and bake for 1 hour, until the beets are tender; transfer to a large rimmed baking sheet and let cool; discard the liquid and spices.

Meanwhile, in a bowl, mix the shallot, vinegar and a large pinch of salt. Let stand for 10 minutes. Stir in the orange zest, tarragon, parsley, chives and oil; season with salt.

Peel and trim the beets and slice them 1/4 inch thick. Arrange the beet slices in overlapping rows on a platter. Stir the herb dressing and spoon it over the beets. Scatter the pistachios and celery leaves on top and serve.

Arrange watermelon and jicama in layers on a shallow platter, fanning and stacking segments as you go along. In a small bowl, whisk together the lime juice, olive oil, spice, and some of the salt and pepper. Taste and adjust as necessary. Scatter basil leaves over the salad.

So I’m currently binge watching a show where they keep putting a girl under medical testing. Each time she gets more familiar with it but it never ceases to hurt. The last time they showed her she went under and was crying to be let up/out.

It’s weird what you remember and cling to after traumatic events. After being so sick there’s a comfort in being at the hospital. I’m terrified of something going wrong suddenly again and being at home and shrugging it off. At the hospital, I may be treated strangely but I feel safe. Some of my transplant team considers former alcoholics as permanent addicts and when we go back to the ER we are only seeking drugs, not worried about our life after transplant. Which is pretty terrible, but at the same time the voice in the back of my head tells me I deserve that treatment. However, just so you guys know – non-alcoholic fatty liver disease will be the leading cause of liver transplants in the next 10 years. I guarantee they aren’t going to police fat people on their diets or consider them “food” addicts. #Americanstigma

Moving on.

So this made me think of some of my procedures in ICU. Just so everyone knows I wasn’t brave, I just didn’t have another option. I just had to lay there and let the doctors do what they were going to do to save my life no matter how much it hurt. In the ICU there are a lot of procedures, some semi-surgical that they can do in your room. One of my first nights I had a “Swan Tube” put in bedside which is a right heart cath. They had to make sure I was “sterilized” so I had a surgical blanket or whatever it’s called put over my head. So I was laying there, under a blanket in an insane amount of pain breathing my own air with my collapsed lung laying on my left side. Sucked. But still I knew nothing was going to happen to me. I felt comforted.

One time in between my liver surgeries I woke up in my room. See the morning of my liver transplant the procedure began in my room bedside again. They were putting a line into my leg I think for my bypass. Anyways, I woke up in between surgeries in my room with another procedure finishing up. My pain medicine and anesthesia had worn off but whatever that paralyzing medicine they give you for major surgery hadn’t. so I was under the same blanket, in crazy pain trying so, so hard to scream or move anything to let them know I was awake. Fortunately for me and my tear ducts functioned and a nurse peaked under my blanket and saw tears and told the doctors, “um…I think she’s awake she’s crying”….then blackness…nothing. Thank God…again comforted.

I guess all this to say, it’s weird how someone that goes through so many procedures and pain both loves and hates the hospital. Despite how some people treat me there.

Also, if anyone reading this works with addiction or health issues/medical field…despite what your prejudices tell you, those people are people too and deserve to be treated accordingly. This last time I even had a nurse step over her bounds and lecture me about how I need to stop coming into the hospital or they won’t give me another liver in 3-4 years because each time I get admitted even though (according to her) I was legitimately sick with infections someone will chart it as me seeking drugs. And to watch my step. Good times. Saturday recipe to follow. Cheers all.

“For those who believe in God, most of the big questions are answered. But for those of us who can’t readily accept the God formula, the big answers don’t remain stone-written. We adjust to new conditions and discoveries. We are pliable. Love need not be a command nor faith a dictum. I am my own god. We are here to unlearn the teachings of the church, state, and our educational system. We are here to drink beer. We are here to kill war. We are here to laugh at the odds and live our lives so well that Death will tremble to take us.” – Charles Bukowski